HD is a genetically caused brain disorder that causes uncontrollable bodily movements and robs people's ability to walk, talk, eat, and think. The final result is a slow, ugly death. Children of parents with HD have a 50-50 chance of inheriting the disease. There is no cure or treatment.

HD Blogs and Individuals

Thursday, October 21, 2010

Could the cure of Huntington’s, Alzheimer’s, Parkinson’s, and other devastating neurological diseases finally become the national priority that the millions of us affected by these diseases have yearned for?

We may be one step closer to such a campaign, thanks to the drive and imagination of Maria Shriver, one of our country’s most articulate and outspoken leaders.

Speaking about Alzheimer’s on ABC-TV’s “This Week” news program this past Sunday, October 17, Shriver coined a phrase – “an expedition to the brain” – that could help spark a national campaign against neurological diseases.

“This president (Obama) could say, I want to launch, just like Kennedy launched an expedition to the moon, he could launch an expedition to the brain,” said Shriver. “There are so many secrets in the brain that can uncover the cures for Alzheimer’s, Huntington’s, Parkinson’s, intellectual disabilities, how we learn, how we love, how we remember. All of this is in the brain. Why not have something like that in this country to galvanize people around?”

As someone who is gene-positive for Huntington’s disease, I was overjoyed to hear Shriver bring attention to the disease that took my mother’s life in 2006 and could destroy my own brain, leaving me unable to walk, talk, think, and swallow.

(Click here to watch a video of the program and read related articles.)

An Alzheimer’s “tsunami”

Shriver, the First Lady of California and the niece of President John F. Kennedy, became an Alzheimer’s disease activist after watching the condition afflict her father Sargent Shriver, the founder of the Peace Corps during the Kennedy administration.

Mr. Shriver was diagnosed in 2003. He can still pray the rosary, Maria recalled in another recent interview, but he no longer remembers who she is.

The program included an interview with former First Lady Laura Bush recalling how her own Alzheimer’s-stricken father had forgotten the identity of her husband, George W. Bush, when Bush was governor of Texas. Her father ultimately succumbed to the disease.

Shriver’s appearance followed the release of The Shriver Report: A Woman’s Nation Takes on Alzheimer’s, which describes the enormous financial and personal burden the disease has created for millions of families and for the country as a whole.

Families hit by the disease spend an average of $56,000 on care. An Alzheimer’s “tsunami” is about to hit America, with a projected cost of $20 trillion over the next 40 years as tens of millions of Baby Boomers move into old age.

HD also exacts a huge social and financial cost. An estimated 30,000 Americans have HD, and some 150,000-250,000 are at risk.

Time to stand up

“I think this president and this Congress can stand up and say, ‘This is a national epidemic,’” Shriver said in a separate ABC interview. “We can get a national strategy. If we launch a national endeavor to underscore and find out what's going on in the brain, I think we can get the money.”

Shriver added that both the media and businesses need to pay more attention to the Alzheimer’s epidemic. She proposes changes in national family leave legislation so that more people can take off time for elder care.

Shriver’s prominence and passion for eliminating brain diseases – together with the growing awareness about these conditions and their enormous negative impact – might finally bring them onto the national political radar screen.

The “cure industry” and the brain

I share Shriver’s passion and determination that our country embark on an expedition to the brain.

“America’s call to action today should focus on the elimination of disease,” I wrote. “America proclaimed a war on poverty and another one against drugs. What we need now is a mission to find treatments and cures for all diseases.”

Instead of borrowing our way out of economic crisis, I proposed that we “create our way out” by stimulating the growth of the cure industry. America can and should lead the world in producing cures, and our biotech industry can reap profits and create the kind of high-paying jobs necessary for maintaining our standard of living and economic leadership.

The expedition to the brain and the new cure industry would go hand in hand.

Purpose and urgency

Clearly our country has already begun to move in this direction. In recent months TV journalist Charlie Rose has broadcast The Brain Series, which explains the huge strides being made in brain research.

But we need a greater sense of purpose and urgency to meet the challenges of HD, Alzheimer’s, and other neurological disorders.

Lamentably, I noted in last year’s posting, none of our national leaders has spoken out about this great potential.

“Great commentary!” wrote one of my blog commentators. “How do ‘we’ get our ideas to the legislators for consideration? It HAS to be done.”

Leadership required!

We need leadership. Once again the current electoral campaign is illustrating a dearth of this capacity.

A case in point is the race to succeed Shriver’s husband Arnold Schwarzenegger as the governor of California.

Once again, the candidates are employing attack ads – not new ideas. Jerry Brown appears to be on an end-of-career adventure, and, spending $140 million of her own cash on her campaign, Meg Whitman seems to be thinking more about a future run at the presidency than about solving California’s current problems.

None of the candidates has put forth a convincing proposal for solving California’s debt and jobs crises.

In this climate of uncertainty and indecision, it’s no wonder that an independent movement like the Tea Party is gaining steam.

Shriver as candidate?

Maybe it’s time for Maria Shriver to run for office. Because of her intelligence, passion, and vision, she would make a strong and provocative candidate.

At Yale I studied in a seminar with her brother Tim. He projected an air of both confidence and concern – both still very much evident in his leadership of the Special Olympics, where he became CEO in 1996.

“I’ve tried to shift the conversation here from what Special Olympics does to what it means,” Tim wrote last year. “It’s often seen as a service organization, but I believe that it’s a civil rights movement. Volunteers might think that they’re only coaching or serving water at a track and field event, for example, but they are doing far more. My mission has been to remind them that they are serving the search for human dignity and acceptance.” (Click here for the full article.)

We need more leaders with the Shrivers’ common sense and compassion.

A call to action

The care for people debilitated by disease and the search for cures should also be a civil rights movement that awakens Americans to our biotechnological and moral potential.

The expedition to the brain is one that we should all embark upon. These issues affect Republicans, Democrats, and independents alike. And the cure industry can and should involve all sectors of society: government, business, labor, and academia.

Like the expedition to the moon, the exploration of the brain could produce numerous spinoffs that would benefit people in as yet unimaginable ways. When future generations look back, they will admire the foresight and courage of those like Maria Shriver who inspired us to take the journey.

Let’s everybody in the HD, Alzheimer’s, Parkinson’s, and other neurological disease communities rally around Shriver’s call to action.

Monday, October 11, 2010

As a person who is gene-positive for Huntington’s disease, I have steadily stepped up my involvement in the cause to stop it. My commitment began a couple years after learning of my mother’s diagnosis in late 1995 and intensified after I tested positive in 1999.

Lately, as I take on ever more tasks in the movement, I should feel great satisfaction. And I do.

But, ironically, I’ve also felt that I’m losing control over my life. I feel overwhelmed by what I call my three jobs: family, work, and the HD cause. And my decision to gradually go public about my status will forever change how people see me.

Big goals

On September 24 I made my first speech in the United States about my family’s struggle against HD.

After blogging on that presentation, I delved into an overdue writing project for my work. A lot is riding on it, because, if successful, it could lift my profile in the world of writing and help me raise awareness about the need to fight HD and other genetic diseases.

I had been working on this project for six months, and when I turned it in last Thursday, October 7, I felt an enormous relief.

But I immediately had to prepare for something even more important: the next day, October 8, I would pay my annual visit to Isis Pharmaceuticals, Inc., for an update on the company’s historic attempt to stop HD.

Genetic guerrillas

My professional writing project is about former South American guerrillas accused of terrorism. Suddenly, I had to shift to thinking about oligonucleotides, or oligos, which are a bit like genetic guerrillas. If all goes as planned, these guerrillas will bind to messenger RNA in the brain cells of HD patients and block the process that kills the cells.

Known as antisense technology, the Isis approach is a rare attempt to stop HD at its genetic roots. So it might lead to a “cure,” although Dr. Frank Bennett of Isis cautions against the use of that word. The more likely outcome is a treatment that becomes one in an array of medicines.

I spent several hours reviewing my past articles on Isis, posters on oligos presented at scientific meetings, and the notes from my conversation with Dr. Doug Macdonald, the director of pharmacology at CHDI Management, Inc., informally known as the “Cure Huntington’s Disease Initiative,” a collaborator with Isis in the oligo project.

My life in their hands

At Isis I was overwhelmed to see Dr. Bennett, the senior vice president for research, and Dr. Gene Hung, the scientist in charge of the HD research project. In my imagination these two men, along with others on the Isis team, hold my life – and the lives of tens of thousands of HD patients and at-risk individuals – in their hands.

Before we even began the interview, I warmly thanked Drs. Bennett and Hung for their dedication to assisting the HD community.

I desperately wanted to hear from them that Isis had found the treatment and was ready to begin testing in humans. In a nutshell, the project is taking longer than anticipated, but the progress is remarkable. (Later I’ll blog in greater detail on what I learned.)

Driving home from Isis, I felt a strange mix of euphoria and angst. I had just received encouraging news, and I had successfully carried out an interview on a difficult and complex subject.

But there are no guarantees the project will ultimately arrive at an effective treatment.

And, I wondered, what if it comes too late? My mother died of HD in 2006 at the age of 68, and, at 50, I am already past the age at which her symptoms began.

I wanted to both celebrate and hunker down.

The grapevine

Several months ago I told a good friend and professional colleague about my situation. This was the first time I revealed HD to anybody in my field. He showed great compassion and even made a donation to the Huntington’s Disease Society of America.

Last night I got a surprise call from a mutual friend and colleague who had heard that I was facing “health issues.” He was concerned that I might have something like multiple sclerosis or prostate cancer.

The inevitable grapevine has gone into action, I thought to myself. I have known this person for well over a decade and have trusted him on many professional questions. I decided to tell him about Huntington’s disease – and about how it was important for me to keep it hidden for so many years.

HIV-positive and HD-positive

The first friend had no inkling whatsoever about HD, but the second knew a family affected by HD and had learned in great detail about its medical and social impact.

He immediately got the picture.

This man is openly gay, and so I knew that he could identify with someone who was gene-positive for a deadly disease. In fact, I had previously imagined coming out to him because of his background as a gay rights activist.

We spent a while discussing the similarities between the situations of HIV-positive and HD-positive people.

Both groups have suffered a horrible stigma, leading to problems of discrimination in the workplace and other areas of life. Success in our shared professional field depends a lot on perceptions, and the slightest hint of an inadequacy of any kind can sour a person’s plans to advance.

And the victims of both HIV and HD face a terribly agonizing waiting game of wondering when and how symptoms will develop.

The end of control?

My friend expressed unconditional support, including future advice on how to come out.

I am sure I’ll be calling on him in the coming months. As I’ve written before, our society has developed a ritual for coming out about HIV and other well-known maladies, but still lacks one for genetic diseases, especially orphan conditions such as Huntington’s.

Although my two friends have promised to protect my identity, I know that as I speak out more about HD, the grapevine effect will grow. There is no such thing as a secret once it’s been shared. I will need to prepare myself for more phone calls, e-mails, and personal questions.

The lack of control over people’s perceptions of my HD status is something that I’ll have to live with the rest of my life.

I become especially distressed when I remember how my own mother lost control of her mind and body as HD ravaged her brain. HD people lose control over their movements and basic abilities such as walking, talking, and thinking.

HD people pass control over their lives to caregivers and, as death nears, to nursing home workers. I vividly remember how my father and later healthcare personnel spoon-fed my mother. It was as if she had returned to childhood.

In the end, nobody controls his or her biological destiny: death. People with devastating diseases have an acute awareness of this fact of life.

New and better bonds

As I approach my own destiny with HD, I will need to build ever stronger ties to people.

Going public will forever eliminate control over my genetic information, but it will also connect me to a growing number of people within the HD community and beyond.

I have long feared going public, but in doing so I can find new allies like the friend who called me yesterday to offer support.

HD could leave me completely dependent on my wife and daughter, so I also need to continue strengthening my bonds with them. If and when they need to care for me, I want that transition to go as smoothly as possible. I don’t want to be a burden, but know I could become one. I want to love and care for them while I can.